Saturday, February 11, 2017

Grief can came in so many ways. It does not mean you are weak, its about how strong you are dealing with a hard situation.  For me my grief is how my body is failing on me.  I want to do so much more, see things I haven't seen, enjoy new adventures and enjoy life longer.  With all my medical conditions, knowing how I feel every day pushing myself to get up to face the day. Every day is a battle.  I remember the old days where I would get just a sinus infection and think to myself this shall soon pass and I'll get better.   People take for granted of everything in life. I don't have that luxury anymore.  I won't get better. There is no cure..... this is my grief, forever.

There has been a lot that has happened since my last blog in August. Its hard to even come to terms with it all. Lets take a step back a bit. It all started with having thyroid issues 20 years ago after seeing numerous specialist of levels going up and down like a roller coaster it was determined I had Hashimoto.  Lets jump forward to 2010, vomiting once a week, never understanding why.  Finally determined it was my gallbladder.  Had surgery but it made things worse, not better.  From there, I developed Gastroparesis, a stomach disease.  Then Gastritis, IBS (Irritable Bowel Syndrome) and GERD (Gastroesophageal Reflux Disease) . Nausea, vomiting and a lot of abdominal pain. Developed pylori-spasms, had surgery to widen the sphincter hoping it would help with my delayed stomach emptying but developed Dumping Syndrome due to surgery. My luck really stinks! Soon after, I had an endocrinologist test my thyroid again and decided after all these years something wasn't right. She wanted to do more tests. So a cortisol and MRI was ordered, sure enough I was diagnosed 3 more rare diseases with no cure, Primary Adrenal Insufficiency (Addisons Disease), Secondary Adrenal Insufficiency. The MRI results showed a flat pituitary gland (Empty Sella Syndrome) another words my pituitary gland can not produce the natural hormone that our bodies need to sustain life,  About another year later I noticed my toes turning purple, finger tips red while the rest of my fingers looked pale when I was cold. My doctor diagnosed me with Raynauds Disease.  A couple of months ago I was diagnosed with chronic cystitis and mild dysplasia on my bladder and was basically told that the cause was unknown. Numerous doctors don't believe the medications I am on would cause any problems with my bladder. Unfortunately with mild dysplasia, there is nothing they can do until it turns into cancer. That's a nice thought huh? I now have a permanent neurostimulator (spinal cord stimulator) implanted in my back to help with my abdominal pain. Overall the stimulator works good but I still have some back pain in the muscle beside surgical area. Was told that I had inflammation in my spine known as spondylosis of thoracolumbar region (Degenerative Artritis). and what my pain specialist would like to do is give me an injection on both sides of the spine to reduce the nerve pain. After 6 months if the injection doesn't work then they can go back in to burn the nerve endings. Kind of a scary thought.  Within the month not only did I find out I had spondylosis in my spine but I also was informed I have a heart condition.  I wore a heart monitor for 24 hours and a ultrasound on my heart and kidneys.  The heart monitor indicated I have a very high heart rate even during resting, Test results showed I have Sinus Tachycardia and a mitral valve leakage in my heart also known as valve regurgitation. I was told that if the leakage becomes worse or have calcium build up on the valve then I will need to have heart surgery.  I was placed on 12.5 mg metoprolol a day to slow my heart rate down.  While on medication my heart rhythm is within the normal range.  I'm glad my doctors are concerned with my health.  With a high heart rate they were really concerned about me having a stroke. One thing for sure with all my diseases I feel no desire to keep pushing myself.  I'm getting too tired to fight.

What I don't understand is how much more can a person handle before they break.  I received my denial papers for disability.  Two days before Christmas and I get hit with a denial papers. Their reason for not approving me is that I am not disabled enough.  Really? I have a list long of diseases that could kill me really at any given time.  My symptoms are nausea, vomiting, dizziness, loss of short term memory, bloating, headaches, muscle aches and pains in joint areas, lack of appetite, fatigue, depression, lack of blood circulation to my hands and feet, blood in urine, constipation, diarrhea, confusion, cant bend over or stretch, can't lift heavy items, upper and lower back pain, blood in stools, lack of energy to even attempt to work, I'm cold all the time, heart palpitations, blood pressure and heart rate sky rockets when I am vomiting and running to the bathroom.  I recently found out that I have acute acid reflux.  The normal person may have only 4% acid reflux, mine is 19%,  The muscle from my esophagus to my stomach is extremely weak therefore food will just come right back up. One of my doctors recently told me that all of my doctors are just trying to keep you comfortable as much as possible.  I know there is no cure for what I have and I know my medications are helping me stay alive.

I once heard that the weakest person is a person who thinks they can't be broken.  I know I am broken.  Broken into millions of pieces and there is no possible way to glue to pieces back together.

1 comment:

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